Rare Diseases: Self-help And Patient Involvement - A Father Remembers

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Rare Diseases: Self-help And Patient Involvement - A Father Remembers
Rare Diseases: Self-help And Patient Involvement - A Father Remembers
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Video: 10 Tips for Newly Diagnosed Rare Disease Patients and Families 2023, February

Self-help and patient participation - a father remembers

“My daughter Lena was born 25 years ago - with a large wound on one of her little feet. What nobody knew back then: a butterfly child. What nobody could tell us back then: what kind of disease it is, whether it can be cured, where can you find specialists. Questions about questions and no answers. Barely two years later, DEBRA Austria was founded, the patient self-help group for people with the rare disease epidermolysis bullosa (better known as "butterfly children"). The main goals were to share experiences, mutual support, encouragement, and regular meetings. It has remained that way to this day. In the meantime, however, there is also an EB House - designated as the first Austrian expertise center - a special clinic operated with donations for the care of large and small patients.Conclusion: For those affected, a lot has changed for the better through the commitment of those affected."

Dr. Rainer Riedl, chairman of Debra Austria


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  • A roof for the "rare"
  • The “rare ones” have character
  • What do self-help organizations offer?

A roof for the "rare"

These positive experiences from self-help and the many challenges that people with rare diseases have to face were the impetus for the foundation of Pro Rare Austria, the alliance for rare diseases, in 2011. Since then, more than 60 self-help groups and associations have been won as members and the National Action Plan for Rare Diseases has been drawn up and at least partially implemented - together with the relevant stakeholders from the health and social sectors. Pro Rare Austria sees itself as a platform that highlights the challenges of people with rare diseases, processes them professionally and brings about long-term improvements. The umbrella organization acts as an intermediary between those affected, politics, authorities, health service providers,Science and research as well as the pharmaceutical industry and as a mouthpiece for the 400,000 affected people in Austria.

The “rare ones” have character

In some cases, patient organizations for rare diseases differ significantly from other self-help organizations. To name just a few examples: You are often active nationwide and internationally networked, the number of members is often too low to set up regional groups or there are not necessarily those affected in every federal state. Due to the spatial dispersion, there is a need to travel or to use digital media more in order to network. Some groups are organized as loose communities of people, as the formation of an association can be an insurmountable obstacle for people with severe health problems. In addition, there tend to be fewer cooperation partners and potential supporters available, for example,because the disease is medially unattractive or because there are no drugs and hardly any experts.

As a member survey by Pro Rare Austria from 2018 shows, self-help for rare diseases has the following characteristics:

  • She is female (around 2/3) and 50 years old = " (average),
  • works on a voluntary basis (93 percent) 15 hours per week (average) and
  • is divided almost equally between those affected and their relatives.

Only about ten percent of the sick are currently anchored in self-help (as active people or members of an association). As before, many people try to walk the path through the illness on their own, have no knowledge of the existence or the services of self-help or withdraw after using counseling offers.

What do self-help organizations offer?

If a person seeking help turns to a self-help organization or group, the three most common questions turn around

  • the choice of doctor (recommendation by experts),
  • existing treatment options (experience with therapies) and
  • the possibility of obtaining financial support.

In addition to advising and guiding those affected, the patient organizations are very active in public relations. You are increasingly spending time on political work and international networking. In doing so, they partly work on the development of patient registries and databases and thus support basic research, contribute to the ethics committee and the development of treatment and emergency guidelines, and are in contact with experts (e.g. organization of congresses).

Self-help associations are currently receiving financial support from the state umbrella organizations for self-help, the social insurance institutions, the Federal Ministry for Social Affairs, Health, Care and Consumer Protection (BMSGPK) and the Austrian Competence and Service Center for Self-Help (ÖKUSS).

Additional Information:

  • Self-help groups and associations for rare diseases (Pro Rare Austria)
  • EURORDIS - Rare Diseases Europe
  • Project funding from the Ministry of Social Affairs (Federal Ministry of Labor, Social Affairs, Health and Consumer Protection)

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